Preprint Article Version 1 This version is not peer-reviewed

Communicating Health Information at the End of Life: The Carers’ Perspective

Version 1 : Received: 22 May 2019 / Approved: 23 May 2019 / Online: 23 May 2019 (06:09:36 CEST)

How to cite: Ibañez-Masero, O.; Carmona-Rega, I.M.; Ruiz-Fernández, M.D.; Ortiz-Amo, R.; Cabrera-Troya, J.; Ortega-Galán, Á.M. Communicating Health Information at the End of Life: The Carers’ Perspective. Preprints 2019, 2019050280 (doi: 10.20944/preprints201905.0280.v1). Ibañez-Masero, O.; Carmona-Rega, I.M.; Ruiz-Fernández, M.D.; Ortiz-Amo, R.; Cabrera-Troya, J.; Ortega-Galán, Á.M. Communicating Health Information at the End of Life: The Carers’ Perspective. Preprints 2019, 2019050280 (doi: 10.20944/preprints201905.0280.v1).

Abstract

Health information and communication are key elements that allow patients and family members to make decisions about  end-of-life process and guarantee a death with dignity. Objective: To understand carers’ experiences regarding health information and communication during the illness and death of family members. Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were carers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and 5 discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyse the discourses. Results: Four dimensions of the dying process emerged: differences in carers’ perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change. Conclusions: Poor management of health information and communication at the end of life suffering and discomfort patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.

Subject Areas

information; end of life; humanisation; health care system; qualitative research

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